Living With Stiff Person Syndrome

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awareness, knowledge, hope

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Did you know?

Stiff Person Syndrome (SPS) is also known as Stiff-Man Syndrome or Moersch Woltman.

There are Variants of Stiff Person Syndrome.
Stiff Person Syndrome is rare affecting 1 in one million.
The federal government defines a rare disease as one which affects fewer than 200,000 people. It is estimated that approximately 6,800 rare disorders collectively affect more than 25 million people in the United States.

National Organization of Rare Disorders (NORD)

It is difficult to say what is impossible, for the dream of yesterday is the hope of today and the reality of tomorrow. ~Robert H. Goddard~

Stiff person syndrome (SPS) is a rare neurological disorder with features of an autoimmune disease. SPS is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms. Abnormal postures, often hunched over and stiffened, are characteristic of the disorder. People with SPS can be too disabled to walk or move, or they are afraid to leave the house because street noises, such as the sound of a horn, can trigger spasms and falls. SPS affects twice as many women as men. It is frequently associated with other autoimmune diseases such as diabetes, thyroiditis, vitiligo, and pernicious anemia. Scientists don’t yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord.

NINDS Stiff-Person Syndrome Information Page

After numerous misdiagnoses, I was diagnosed with Stiff Person (Stiffman) Syndrome in 1994 following four years of progressive rigidity, painful spasms, and falls. Severity of my symptoms and lack of knowledge created fear and future uncertainty for me with my diagnosis.

Effective medication/treatment, understanding the syndrome as it relates to me, and reevaluating life in my diagnostic fallout have helped empower me to live forward with the challenges of Stiff Person Syndrome.

In 2004, I created this website to provide information, awareness, and understanding of this rare disorder. In sharing my personal SPS journey, my desire is to enlighten and encourage anyone who walks this path with me. May knowledge and understanding give you wings of hope.

This website is not affiliated with any charity nor endorses any medical facility, physician, or treatment for Stiff Person Syndrome. The information and experiences shared in this website are not intended to be a substitute for professional diagnostic evaluation and care.

Dedicated to the searching, the struggling, and those who persevere...my reasons.

"Hope" is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –

~ Emily Dickinson ~

Revised June 2011